Straight Talk

Everyone has the right to good end of life care, but does this happen in reality? Claire Henry MBE, who specialises in end of life care, delves into the latest statistics and shares her analysis.

A recently published report by Marie Curie suggests that we need to look at the experiences of people dying during the last year and what lessons can be learnt.

The number of deaths has been steadily increasing since 2015-2019 from 604,000 deaths per year to 695,000 in 2020 – an increase of 15%.1

We have all seen the figures over the year from the daily briefings from Government, scientists and politicians on the number of deaths each day. But let us stop and think for a moment, because behind each one of these numbers is an individual with family and friends who may or may not have been with them when they died; be that in hospital, care home, hospice, or home. They will be grieving for their loved ones in so many ways. A recent American study suggests that for every person that dies there are nine bereaved people. This translates to 6.2 million people experiencing deaths during COVID-19.2

Over the last year hundreds and thousands of people have been affected. When looking at the overall numbers of people who died, fewer than one in seven deaths during 2020 were due to COVID-19 and the majority of other deaths were due to long-term conditions and terminal illness.1

According to the Marie Curie report, during the first COVID-19 wave, the number of individuals dying in care homes trebled but this did decrease during the second wave. In England, Scotland and Northern Ireland, care homes, for a short time, overtook hospitals as the most common place to die. It is also important to note that during 2020 there was an increase in the number of people dying at home, accounting at times for up to 40% of total deaths. There was a decrease in deaths in hospices, with services changing to provide more community and advisory support.

Looking at care from a bereaved carer’s perspective – three quarters of carers reported their loved one did not get all the care and support they needed.

Some of the other key report 1 findings included:

  • 64% of carers said their loved one did not get all the help they needed with pain management.
  • 61% said they did not get enough support with personal care.
  • 65% said they did not get enough out-of-hours support.
  • 76% of all respondents felt they were not offered all the care and support they needed as carers.
  • 56% were unable to visit their loved one prior to death.
  • 67% said they were unable to say goodbye as they would have liked, and experienced social isolation and loneliness.
  • 17% said they were not informed about the approaching death.
  • 51% had no information about bereaved support. Of those who did try to access support, 56% found it difficult. People who had been bereavement though non COVID-19 felt less entitled to support.3

Taking all this into account, what are the implications? The whole experience for family, informal carers and professional carers has taken its toll emotionally, physically, socially, and spiritually. Besides having to care for people who are dying, many professionals have also had their own personal experiences of grief and loss, which has, for some, intensified their caring role.

The impact of lockdown, social distancing, rules around visiting and attendance at funerals to name a few has contributed to isolation and loneliness for those who are dying and the bereaved. The grieving process for many has been disrupted, as many are unable to get the support of family and friends. Lack of visiting in care settings has compounded a sense of loss and guilt about the death of a loved one. There is a need to increase access and develop bereavement services.

It is imperative that we look at the lessons learned by the health and care sector; as to what has worked and what needs to be improved in relation to new models of care, be that in the way care has been delivered, the use of technology, new partnerships with health and other services that have continued to develop or strengthened alongside clear and timely funding routes for care.

There is a real need to ensure we continue to develop community-based care now and for the future. In 20 years’ time there will likely be 100,000 more people dying each year in the UK and more demand for end of life care with people living longer with more complex conditions. There is also the need to understand the needs of different communities, ensuring the services provided reflect the diversity and uniqueness to ensure care is delivered to all.

A whole system approach is needed that integrates care around the individual and their family. We must take the lessons learned during the last year seriously, to ensure person-centred care is delivered. We all need to remember that we only get one chance to get this right.


Claire Henry MBE is Director of Claire Henry Associates. Email: info@clairehenryassociates.com Twitter: @clairehenry_

Do you agree with Claire’s comments? Share your response.


References

  1. Sleeman KE Murtagh FEM, Kumar R, O’Donnell S, Cripps RL, Bone A, McAleese J Lovick R, Barclay S and Higginson IJ (Kings College London, Cicely Saunders Institute; Hull York Medical School, University of Hull; and University of Cambridge UK) Better End of Life 2021. Dying death and bereavement during Covid-19. Research report London (UK) Marier Curie 2021 https://www.mariecurie.org.uk/policy/better-end-life-report
  2. Veerdry A Smith-Greenaway E Margolis R and Daw J Tracking the reach of Covid- 19 kin loss with a bereavement multiplier applied to the United States Proceedings of the National Academy of Sciences 117(30) 1765-17701 2020 Tracking the reach of COVID-19 kin loss with a bereavement multiplier applied to the United States | PNAS
  3. Harrop E Farnell D Longo M Goss S Sutton E Seddon K Nelson A Byrne A Selman LE Supporting people bereaved during Coid-19 Study report 1 Cardiff University and the University of Bristol 2020 26b83b_43690ce0978740548d92096c8c10ff7f.pdf (filesusr.com)

 

 

 

About Claire Henry MBE

MBE RGN Postgraduate Diploma BSc (Hons)
Independent Consultant in Palliative and End of Life Care
Claire Henry is an Independent Consultant specialising in end of life care. Her previous roles have included National Director for the NHS End of Life Care Programme which supported the implementation of the National End of Life Care Strategy for England, Chief Executive of the National Council for Palliative Care and Director of Improvement and Transformation at Hospice UK.

Claire’s background is in nursing; she trained at South Lincolnshire School of Nursing. After qualifying, she worked predominately in cancer and palliative care. She was awarded an MBE for her services to improving end-of-life care in the Queen’s Birthday Honours 2013. Claire has also received a lifetime achievement award from the International Journal of Palliative Nursing Award.

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